Guest guest Posted June 11, 2009 Report Share Posted June 11, 2009 Ken, I am not aware of any formal "stages" for pulmonary fibrosis. The only time I've heard a stage referred to is if a doctor tells someone they are in "end stage". But we've had members of this group who go on living in "end stage" for years. If people ask you what stage lung disease you have you can use the opportunity to share information about pulmonary fibrosis with them. Cancer is typically referred to in stages so perhaps they think that pulmonary fibrosis has similar 'stages'. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, June 11, 2009 11:47:41 AMSubject: stages good morning all could someone explain the differant stages of PF, i don't recall if my pomodoc explained them or even told me which state i'm in, and, when i tell someone about my lung problem they ask me which stage i'm in, and i fell embarrassed that i don't know, so i simply say stage 1 as i beleive thats the lessor stage? and stage 4 is the worst? but i will make it a priority question when i see my pomodoc in sept. thanks ken o. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2009 Report Share Posted June 12, 2009 peggy e have you checked out the coalition for pulmonary fibrosis website -- that tends to be more political -- they also do all day seminars -- a couple of years ago i went to one that they held in New York, i forget which hospital, maybe Mt Sinai it was excellent Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: stagesTo: Breathe-Support Date: Friday, June 12, 2009, 4:50 PM That is exactly what I was going to say - the world is so focused on cancer. How can we get more exposure about this disease? I haven't been told about anything other than that I am 'stable' and then he caveats it with 'at the moment' which feels like a blow somehow! :)Peggy Ellis - survivor of the 24 hour test From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: stagesTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 10:29 AM Ken, I am not aware of any formal "stages" for pulmonary fibrosis. The only time I've heard a stage referred to is if a doctor tells someone they are in "end stage". But we've had members of this group who go on living in "end stage" for years. If people ask you what stage lung disease you have you can use the opportunity to share information about pulmonary fibrosis with them. Cancer is typically referred to in stages so perhaps they think that pulmonary fibrosis has similar 'stages'. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 11:47:41 AMSubject: stages good morning all could someone explain the differant stages of PF, i don't recall if my pomodoc explained them or even told me which state i'm in, and, when i tell someone about my lung problem they ask me which stage i'm in, and i fell embarrassed that i don't know, so i simply say stage 1 as i beleive thats the lessor stage? and stage 4 is the worst? but i will make it a priority question when i see my pomodoc in sept. thanks ken o. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2009 Report Share Posted June 12, 2009 Hi Joyce,Oh boy - just what I need another political group - oh my gawd - that is probably what got me this disease to begin with. Thanks - I'll check it out - I'm learning to be involved without losing myself! Peggy E From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: stagesTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 10:29 AM Ken, I am not aware of any formal "stages" for pulmonary fibrosis. The only time I've heard a stage referred to is if a doctor tells someone they are in "end stage". But we've had members of this group who go on living in "end stage" for years. If people ask you what stage lung disease you have you can use the opportunity to share information about pulmonary fibrosis with them. Cancer is typically referred to in stages so perhaps they think that pulmonary fibrosis has similar 'stages'. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 11:47:41 AMSubject: stages good morning all could someone explain the differant stages of PF, i don't recall if my pomodoc explained them or even told me which state i'm in, and, when i tell someone about my lung problem they ask me which stage i'm in, and i fell embarrassed that i don't know, so i simply say stage 1 as i beleive thats the lessor stage? and stage 4 is the worst? but i will make it a priority question when i see my pomodoc in sept. thanks ken o. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2009 Report Share Posted June 13, 2009 Hi Joyce,Writing letters is something I am good at. I even wrote to Obama since I read that he read 18 letters per day from the public. He probably didn't read mine but he wouldn't read it for sure if I didn't send it right?Are you enjoying the beautiful weather? I just love the summers here (actually I like all the weather here but the summers really are quite beautiful).Peggy E. From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: stagesTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 10:29 AM Ken, I am not aware of any formal "stages" for pulmonary fibrosis. The only time I've heard a stage referred to is if a doctor tells someone they are in "end stage". But we've had members of this group who go on living in "end stage" for years. If people ask you what stage lung disease you have you can use the opportunity to share information about pulmonary fibrosis with them. Cancer is typically referred to in stages so perhaps they think that pulmonary fibrosis has similar 'stages'. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 11:47:41 AMSubject: stages good morning all could someone explain the differant stages of PF, i don't recall if my pomodoc explained them or even told me which state i'm in, and, when i tell someone about my lung problem they ask me which stage i'm in, and i fell embarrassed that i don't know, so i simply say stage 1 as i beleive thats the lessor stage? and stage 4 is the worst? but i will make it a priority question when i see my pomodoc in sept. thanks ken o. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Beth, Wally and Ken - I asked about " stages " while I was in Denver. The Dr. pretty much said there are no stages, per se, it can stabilize or get worse. So, Wally, you hit the nail on the head. You fight, regroup and keep on fighting. I love it. I feel armed and ready! Let's fight this #$@#! thing. Stefani NSIP 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009 > > > From: Beth <mbmurtha (AT) yahoo (DOT) com> > Subject: Re: stages > To: Breathe-Support@ yahoogroups. com > Date: Thursday, June 11, 2009, 12:29 PM > > > Ken, > I am not aware of any formal " stages " for pulmonary fibrosis. The only time I've heard a stage referred to is if a doctor tells someone they are in " end stage " . But we've had members of this group who go on living in " end stage " for years. > If people ask you what stage lung disease you have you can use the opportunity to share information about pulmonary fibrosis with them. Cancer is typically referred to in stages so perhaps they think that pulmonary fibrosis has similar 'stages'. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Overman <kenover44 (AT) yahoo (DOT) com> > To: Breathe-Support@ yahoogroups. com > Sent: Thursday, June 11, 2009 11:47:41 AM > Subject: stages > > > good morning all > > could someone explain the differant stages of PF, i don't recall if my pomodoc explained them or even told me which state i'm in, and, when i tell someone about my lung problem they ask me which stage i'm in, and i fell embarrassed that i don't know, so i simply say stage 1 as i beleive thats the lessor stage? and stage 4 is the worst? but i will make it a priority question when i see my pomodoc in sept. > > thanks > > ken o. > Quote Link to comment Share on other sites More sharing options...
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